Cancer. Can be manageable, even curable. Can bring emotional and difficult decisions. Mary Martin. Cancer 11/22/2010

Transcription

1 Friend Survivor Cancer Patient Coping with Cancer at the End of Life Made possible by a grant from the centers for Medicare and Medicaid Services Relative Caregiver Cancer Can be manageable, even curable Can bring emotional and difficult decisions Mary Martin 1

2 This Program will Discuss: Hospice The impact of terminal cancer on patients and caregivers Tools to help manage the demands of the illness Focuses on quality of life How hospice can help when hope changes Offers comfort and support to patients, families and caregivers The Hospice Team Hospice Doctors and Nurses Address physical pain and symptoms Social Workers and Chaplains Address emotional and spiritual pain Caregivers Receive practical support Nearly 1.5 million Americans were served by hospice in 2008 Hospice cares for people with all life-limiting illnesses Volunteers Provide respite Survivors Understanding Hospice Receive grief counseling and bereavement support for one year 2

3 Cancer in the United States Cancer in the United States Abnormal cell growth Complex 1.5 million Americans diagnosed each year 11 million Americans with a history of cancer alive today 150 different conditions all called cancer Can occur anywhere in the body 77% of people diagnosed are over age 55 Cancer in the United States Risk Factors: Most common in Men Prostate cancer Lung cancer Colorectal cancer Most common in Women Breast cancer Lung cancer Colorectal cancer Most common in Children Leukemia cancer Brain cancer Central nervous system cancer Lack of health coverage Access to medical care Environment Lifestyle choices 3

4 Cancer in the United States Challenges Cancer has replaced heart disease as leading cause of death under 85 Nearly 1,500 Americans die each day from cancer Leading cause of death by disease for children aged in 4 deaths in the U.S. is from cancer Physical Emotional Financial For both the patient and their loved ones Mary Martin Survivorship With remission comes: Adjusting to a new normal Anxiety over possible return of cancer 4

5 Cancer Treatments Surgery Chemotherapy Radiation Targeted therapy Cancer Treatments Make sure websites rely on reputable sources for information Cancer Treatments Cancer Alternative & complementary therapies Cope with disease Deal with symptoms Some cancer cannot be cured Notify doctor about: Vitamins Herbs Homeopathic remedies Palliative care Reality can be difficult 5

6 Battling Keep Hoping Hospice Can Offer: Hope Never Give Up Fight for a Cure Pain management Quality of life Sherry Meyers Transition to Palliative Care Many benefits to early hospice admission Anyone can initiate the conversation about hospice 6

7 Choosing Hospice Choosing Hospice Conversation Hospice professionals provide introduction and information Can speak with patient s physician Admission Require patient consent Physician certification Hospice develops a plan for care Reviewed regularly and changed as needed Over 5,000 hospice locations nationwide Choosing Hospice The Hospice Team Cancer affects the whole person Financially Physically Physician Manages pain and other symptoms associated with advanced cancer Works with other physicians Socially Spiritually Emotionally Nurse Coordinates care Communicates needs to other team members Assesses pain and symptoms And everyone around the patient 7

8 The Hospice Team The Hospice Team Social Worker Provides counseling and mediation Helps navigate health system Locates community resources Volunteer Offers companionship Provides occasional respite for families and caregivers Chaplain Helps patients find answers to spiritual questions Guides in accordance with patient beliefs Can arrange rituals and services Home health aide Provides practical assistance Helps with daily tasks The Hospice Team LaFrance Williams Nutritionist Identifies ways to ensure nutrition for the patient Relieves suffering and provide comfort Therapist Physical, Occupational or Speech Improves daily function Extends independence and ensures safety 8

9 The Benefits of Hospice Pain Management Care comes to the patient Private home Assisted living centers Nursing homes Hospice Team is available 24/7 by phone Unscheduled visits in emergencies As death approaches, the hospice team: Visits more often Works to maintain comfort Reassures loved ones Teaches what to expect, and what to do next Cancer symptoms take a physical, emotional, spiritual, and mental toll Hospice staff are trained to manage and control pain Cancer pain can limit activities Pain is underreported and misunderstood Pain Management Pain Management Asking for pain relief is not complaining Doctors need to know about pain levels in order to provide the best care Unmanaged pain affects: Sleep Mood Participation in activities Addiction rarely occurs in cancer patients Strong pain medications do have side effects Common side effects Constipation Nausea Drowsiness Pain can be controlled in a number of ways By mouth Injection Suppositories Intravenously Skin patches Hospice staff is available: By phone Scheduled and emergency visits 9

10 Medicare Paying for Hospice Care Health insurance program operated by the federal government The Medicare Hospice Benefit covers the cost to receive hospice care Hospice can be paid for by: Different types of Hospice Medicare Medicaid Private Insurance Medicare funded Supported by donations Community based non-profits For-profit businesses Download a booklet, The Medicare Hospice Benefit in English or Spanish or request one in Braille Call toll-free Medicaid Private Health Insurance Health insurance coverage for lowincome individuals and families State funded program In most states coverage is similar to Medicare hospice benefit Hospice coverage varies from plan to plan Medical coverage provided by private companies Can by provided by employer or bought privately Often covers spouses, children, and others in the household 10

11 Medicare Hospice Benefit Cancer patients can choose the benefit under Medicare Part A, when: Eligible for part A A doctor gives a prognosis of 6 months or less Written consent is provided Medicare Hospice Benefit Medical equipment Wheelchairs, walkers, hospital beds Medical supplies Bandages, catheters, latex gloves Medications To manage pain and other symptoms Paying for Hospice Care Where Hospice Occurs Medicare covers hospice in 4 levels of care Routine home care Continuous home care General inpatient care Most common Hospice staff remains until crisis is resolved In a hospital or in-patient facility Most people would prefer to die at home Hospice is provided wherever the patient calls home Check with the hospice to see where their services are provided Respite care Approved facility for short-term 11

12 Paying for Hospice Advance Care Planning Doctors don t always know how long a patient will live A patient can change hospice providers or end hospice care at any time Hospice can continue for an unlimited number of 90 day periods if re-certified Learn more about Understanding Hospice at Explore, discuss, and document preferences and treatment Name someone who is trusted Get support from trained hospice professionals Advance Care Planning Advance Care Planning Advance Directives Provide instructions Designate a proxy Each state has different guidelines and forms For more information: POLST-new program Medicare does not require hospice patients to sign a DNR, or forgo CPR DNR: Do not resuscitate order CPR: Cardio-Pulmonary resuscitation All documents should be included with advanced directives 12

13 Cancer Caregivers Cancer Caregivers Caregiving includes: Preparing meals Cleaning Transportation Medical visits Giving medication Researching treatments Providing emotional support Attending to all needs Stress of caregiving can lead to problems with Health Work Finances Family needs Can lead to burnout or compassion fatigue Cancer Caregivers Signs of Compassion Fatigue Impatience Loss of appetite Difficulty sleeping Difficulty concentrating or remembering Mood changes Less interest in usual activities Difficulty accomplishing routine tasks Mental and physical exhaustion Cancer Caregivers Hospice can help caregivers Nurse- provides instruction with common tasks Doctor- manages pain and symptoms of patient Home health aide- provides personal care Social worker- identifies community resources Chaplain- offers spiritual support to patient and family Volunteer- provides breaks for caregivers 13

14 Cancer Caregivers Medicare hospice benefit provides for respite care Generally up to 5 days Check with hospice about coverage More information available at: Cancer Caregivers Practice Self-Care Eat properly Get enough rest Exercise Cancer Caregivers Grief and Bereavement Respite Take some time for yourself Read about caregiving Join a support group Webinar- Family Caregiving, Coping with the Challenges Hospice offers grief support Grief Reaction to loss Individual response Some may have strong feelings Others may have less emotional response, or none at all 14

15 Grief and Bereavement Grief and Bereavement There is no right or wrong way to grieve Loss occurs throughout the illness Income or jobs Hair or other changes Independence Health and activity Grief and Bereavement Hospice People grieve at their own pace Counseling helps loved ones create memories and a legacy Hospice provides grief support to families and loved ones Free tutorial- Understanding Grief available at Is focused on the patient and loved ones Is intended to enhance and maintain quality of life, comfort and dignity Is palliative- intended to relieve suffering Supports the caregiver Comes to the patient- wherever home is Is covered by the Medicare hospice benefit, Medicaid, and many private insurers Continues after the death with grief support 15

16 Coping with Cancer at the End of Life was developed by: For more information Karyn Walsh, MSW, ACSW, LCSW, Hospice Foundation of America Lisa McGahey Veglahn, Program Manager, Hospice Foundation of America Spence Levine, Senior Program Officer, Hospice Foundation of America Amy Tucci, President/CEO, Hospice Foundation of America For more information on hospice care, grief and bereavement, caregiving and end-of-life issues, please visit our website at Or call us toll-free at: Resources Hospice Foundation of America This program is provided through the support of a grant from the Centers for Medicare and Medicaid Services (CMS) to support hospice and end-of-life care outreach and education. CMS funds of $571,000 with HFA in-kind services of $5,710 are funding a variety of outreach and educational programs, including this audio webinar. Centers for Medicare and Medicaid Services American Cancer Society American Pain Foundation American Society of Clinical Oncology Association for Death Education and Counseling 16

17 Resources CancerCare Compassionate Friends Grief Net National Cancer Institute National Alliance of Family Caregivers National Center on Caregiving Strength for Caring for Cancer Caregivers 17